Wrap post for @WeMelbourne

I’m writing this with a powerful sense of tweetus interruptus, as I’ve hit the daily tweet limit for the @WeMelbourne account HALFWAY THROUGH A CHAT ABOUT HIV-POSITIVE AND NEGATIVE OBLIGATIONS AROUND STATUS DISCLOSURE.

Lot of people now tweeting at me ‘condoms aren’t 100% effective you know, it would be irresponsible not to disclose’ or variations on that, implying that a positive person who keeps their status private is being dishonest.  And I can’t reply and boy it’s killing me…

READ THIS, please:  HIV scandal on Jack’d: Boy, that escalated quickly!

This is why I don’t believe positive people have an obligation to disclose to random strangers if they’re only talking about having safe casual sex.  There is just no way to predict how someone is going to react, and some people react in vindictive, over-the-top ways that can result in a total loss of control about who knows your status.

Positive people themselves talk about feeling an obligation to tell their partner in an intimate, ongoing relationship, but there are different schools of thought on when to do it.  Some will do it on the first date, so that rejection hurts less if it happens, but that’s going to make first dates even more nerve-wracking than usual.  Others will wait until trust has developed and then disclose, but some negative partners react very badly to this, feeling they have been ‘deceived’.

Australia’s National HIV Strategy makes it clear that both HIV negative and positive people have a responsibility for prevention.  That means we can’t just talk about what the HIV positive person’s obligations are.  We need to do more for negative people to help them overcome fear of HIV and learn how to manage HIV disclosure when it happens.

Bio for @WeMelbourne

For the next seven days I’m guest hosting the @WeMelbourne Twitter profile curated by Sarah Stokely (@stokely). This week also marks the one-year anniversary of the first guest, so I’m feeling the pressure to live up to its full potential. I’m looking forward to showing my appreciation for Melbourne life as I live it.

Rather than clog up your timelines with tweets introducing myself, here are five quick facts about me. I’m borrowing these questions from The Guardian Australia’s weekly profiles of the guest hosts of my other favourite guest account, @IndigenousX, curated by Luke Pearson. This week’s guest is Summer May Finlay so please, hop on over and follow @IndigenousX quick smart.

Where are you from?

I was born at Emily Jessie Mac and grew up in Box Hill. I moved out of home when I was 18 — gay kid, Catholic single mum, you know how the story goes. I lived in the ‘South side’ gay enclave for eight years and the cafe lifestyle just felt soo cosmopolitan, but the drunks on the street every night, not so much. In 2008 I moved to Footscray and I’ve never looked back. Yes, there’s visible drug trade but the users are just another group weaving through the crowds and trying to get by.

On a longer timescale, Dad’s family came to Australia from the Netherlands after some years in Indonesia post-WWII. Mum’s family are Irish Catholic Australians going way back, but I was brought up thinking they were Danish — the nationality or family background of my grandfather’s adoptive father, who may or may not have also been his biological father. Complicated.

What do you do?

I’m a writer by disposition. I work in public and community health, planning ad campaigns and writing funding submissions. I also do community consultation and write policy and strategy documents.

I’ve worked on health issues like HIV, viral hepatitis, and cancer screening, and social issues like racism, social exclusion and stigma. I have worked with communities including gay men, people living with HIV and hep B/C, people who inject drugs, international students, refugees and asylum seekers.

I’m always pushing for projects that work with, rather than against the grain of the community in our priority groups — piggy-backing on the ways in which people swap stories and advice about health and social problems as a way of building community and a shared culture.

What do you plan to talk about on @WeMelbourne this week?

I’m hoping to be led by the @WeMelbourne community on what you’d like to hear about. But I’d love to talk about how the HIV epidemic has changed, how it does nobody any good to cling to old ideas about safe sex, and why it doesn’t help when opinion writers and politicians react with outrage to the idea of prevention strategies beyond condom use.

Why don’t we use condoms for oral sex? What are the alternatives to condoms? Are young gay men ‘reckless’ and older gay men ‘complacent’? Go on, ask me about it.

What issue in your community life do you think is most pressing?

I’m waiting for an Australian leader to stand up and say, 12,000 boat arrivals is nothing — so relax everybody, we got this.

I’ve done a lot of focus groups in my time and I know their limitations. People are not good at accounting for their feelings. The second you ask someone to explain why they feel X about Y, they start thinking too much and coming up with reasons that sound plausible. And what’s plausible is judged in terms of the social environment, so if it’s about politics, they’ll regurgitate what they heard from the public debate. ‘Queue jumpers!’ ‘Illegals!’

If you don’t know this, then focus group findings amplify talkback radio amplifies newspaper coverage amplifies electoral strategy amplifies focus group findings.

I’m willing to bet no political party has ever gone to a focus group in Western Sydney and said ‘would you feel better about boat arrivals if we spent enough on humanitarian settlement in your area so that refugees get a good start on life in Australia?’

People in Western Sydney know that social services are starving for funding; they know that inadequate support leads to school dropouts and crime; they’ve a hidden potential for generosity that any genuine leader would have the moral imagination to call on.

Who are your role models and why?

It will astonish her to read this, but I see my Mum as a powerful social activist. In my teens she edited the newsletter of Women and the Australian Church Victoria and railed against the he/him wording of the new liturgy in our Catholic parish, St Dominic’s, where, despite her activism, they still got her to do the readings every Easter and Christmas.

It takes a particular strength of personality to stand up to 2,000 years of misogynist dogma in your own community, and to speak out against it you have to first crash through all those inner walls of doubt and shame and politeness and self-restraint.

So you build up a head of rage and momentum and when you crash through it can look to the outside world like you’ve exploded out of nowhere… and that can make you look crazy and easy to dismiss.

In my adult life I’m still learning how to slow down and engage more gently and strategically. It’s tough going but I’m grateful for my role models on Twitter and in my community of practice, people who I trust and admire to give me guidance on keeping that trajectory controlled.

What are your hopes for the future?

I’m hoping to write up some of the lessons we’ve learned in the Australian response to the HIV epidemic and export them to the world.

Hep C stigma as a pharmaceutical marketing device

A new campaign funded by Janssen-Cilag P/L under the Hepatitis Australia brand uses Hep C stigma to drive users to its product.

Update 31/7/13: Hepatitis Australia has announced they’ve removed the video. Well done all who expressed their concerns to Hep Aust and Janssen-Cilag P/L.

Update 1/8/13: And they’ve uploaded a new version!  See the video below.  Thanks to Lyn Carruthers for pointing this out.  What do you make of it?  Feel free to post your thoughts in the comments.

Continue reading

Biomedical prevention: a revolution with empty streets

This post responds to Kane Race’s invitation to comment on PrEP as a provocative object. As this is a blog about prevention strategy, I want to look at the discursive context in which this object is being offered to gay men. PrEP has been posed as part of a biomedical revolution in HIV governance.

The revolution is offered as the solution to three failures:

  1. Of condoms to completely prevent HIV transmission;
  2. Of gay men to use condoms all the time as required by (1);
  3. Of social marketing and community education to achieve (2).

The revolution is being sold to political purchasers (who provide needed funding, policy support, regulatory sign-off) as the way to achieve ‘bold targets’ — in the United States, an ‘AIDS free generation’, in Australia, ‘Ending HIV by 2020′.

The logic is that policy countenancing anything less than 100% condom use is politically unpalatable, but desperate measures are needed: crisis framing and battleground metaphors, you know the drill.

But premising the revolution on the failure of education leaves it in an odd position when it comes time to sell it to the population, i.e. the assemblage of social networks and identities formerly known as the Gay Community.

I’m reminded of two earlier revolutions:

  • Negotiated safety, or the ‘Talk Test Test Trust’ campaign, led by ACON in 1996. The first time the HIV sector admitted to the gay public that non-condom strategies could be effective as HIV prevention. It followed intense debate in the HIV community sector over whether this was a step that should be taken and how to codify the strategy in a clear and simple message to reduce the risk of failure (McNab, 2009). Unlike in America, where some HIV doctors to this day recommend monogamy in and of itself as a prevention strategy, the Australian pedagogy on negotiated safety acknowledges and responds to the diversity of relationship types, different extents of being ‘open’, uncertainty (‘are we going steady?’), and ‘infidelity’, by emphasising both relationship agreements and ongoing communication.
  • PEP roll-out, when the availability of Post-Exposure Prophylaxis was first publicised to the gay community in Victoria in 2005.  The State Government funded the Alfred Hospital to develop a service, which initially saw gay men going to the Infectious Diseases clinic during business hours or the Emergency Department after hours.  The Alfred then contracted the Victorian AIDS Council to develop a social marketing campaign after the fact.  This treats social marketing as a fancy name for ‘advertising’, rather than a consumer-centred analytical approach that can contribute insights at every stage from designing an accessible service to motivating people to use it (see Lefebvre, 2013).

    Social research has subsequently shown much higher awareness and uptake of PEP in Sydney compared to Melbourne, with Sydney providers welcoming ‘frequent flyers’ (as one clinic director put it, ‘better for someone who struggles with condoms to remain HIV-negative’), while Melbourne providers were more likely to be judgmental (‘it’s not a morning-after pill’).  In Melbourne, doctors at gay community clinics now provide access to PEP in partnership with the hospital-based service, saving a trip to the E.D. and providing far greater ‘cultural safety’ to people accessing it.

The takehome message? Engage with community educators and stakeholders from the very start.

That’s not happening with the ‘biomedical revolution’.  Why would it?  See failure (2): ‘education has failed’.

The biomedical revolution in Australia has more or less ignored PrEP — it’s still subject matter for policy analysts, the position you have when you’re not planning to do anything.  It has focused instead on early detection and early treatment.

Analytically speaking I’m a functionalist: I don’t look at what organisations say, I look at what they do.  That’s essential in this era of strategic communications.  Take focus groups, the mandatory starting point for any new project or campaign.  It says ‘community consultation’ on the tin, but open it up: you’ll find market research, undertaken in private, intended to extract information, not have two-way dialogue.

Or take campaign websites, like the one for Ending HIV: the label says ‘interactive’, but the functionality is restricted: click here, add your name to a pre-written message, sign up to receive messages.  Visitors are offered a subject position that is wholly passive: trust us, we’re the experts.  Sign here to indicate your consent.

I think gay men are smarter than that, and I’d expect them to remain more or less disengaged from ‘revolutions’ that started without them.  On a hunch, I did a quick free-text search on Recon.com, one of the largest sites for men into kink and fetish.

As any user of personals sites knows, meeting other men is only part of their purpose; they are equally important as a safe space for fantasy and identity play. I searched for the term “prep”, as the search functionality isn’t case sensitive. I was curious to see whether HIV-negative men are responding to PrEP as a provocative object by taking it up in this form of play, or as part of their ‘bid’ to other men to meet for different kinds of play.

  • Eighty-eight profiles had ‘prep’ across two separate searches on username or profile text (I didn’t de-dupe, as I’m not doing research and didn’t want to make a table cross-referencing usernames–too creepy).
  • Six profiles were clearly talking about PrEP i.e. pre-exposure prophylaxis, some inviting people to ask them about it, one describing his reference as (paraphrase) an obligatory community service announcement.
  • Seventeen used it to mean preparing or preparation, sometimes as part of the sexual fantasy encounter.
  • Fifty-one profiles referred to prep as a look: a conservative, buttoned-down aesthetic derived from ‘prep school’ and sometimes contrasted with other aspects of identity such as kink or punk or ‘jock’ (athletic).

In this Not-Research exercise I’m more interested in the diversity of usages, but the numbers tell a story as well — we’ve a long way to go before there’s anything like ‘revolutionary’ visibility of PrEP in relevant spaces like this one.

The danger is not that lots of people hear about PrEP and want to give it a go; the danger is that they don’t — that we miss this opportunity to discuss as a community what it will mean to live with endemic HIV.

Instead, we have a revolution from the top down — from the privileged speaking positions of biomedical science and population health — rather than one in which community is involved from the very beginning.

It is framed as an epic battle — ‘bold targets’ and fuck yeah science! — instead of as a mundane and everyday matter of epidemic governance and community health.

And instead of accepting that all prevention strategies are partially effective — including condom use — those who become positive are seen as signs of failure.

This isn’t revolution.  It’s the unsustainable same old.